Western Australia’s HD Youth Service

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December 4, 2015

We were lucky enough to speak with Monica, who is the Youth Liaison Officer for Huntington’s Western Australia to find out more about the organisation’s youth service for young people who have been impacted by or are at risk of Huntington’s Disease!

Huntington’s Western Australia, a support organisation for the disease, was established in 1974 with two carer support groups meeting on a regular basis. This has since expanded to a support group and day centre program for individuals who are symptomatic, a support group for those who have received a positive gene result or who may be at risk and a support group for members from a rural regional centre. The decision to create the HD youth program was made back in 2008. In total, the organisation provides support for over 150 HD families.

Discussions about the need to support young people began when a young man accompanied his mother to one of the regular support groups. Staff from the association were approached by a couple of others attending the group who had young people in their care and believed they would benefit from meeting together. A commitment was made by the association to arrange an initial meeting of young people in the HD community who might be interested in participating in a support group. Families who had young members aged between 12 -18 years were contacted and their children invited to attend the first get together of the ‘teen’ group.

Since then a youth worker position has been created within the association: Monica is the current youth worker and provides professional services and one to one support to young people impacted by HD across Western Australia, as well as developing events for young people impacted by HD across the region. Now, separate programs are provided for different ages: The children’s group gets together a couple of times a year and has a fun day out for the family with children ages 5-11years. The Pony Party in the park was one of the more enjoyable events organised! The young people’s group gets together every school holidays, including a camp over the summer holidays. Young Adults, aged 18-30years get together in an informal way for bowling or other activities or information sessions.

We asked Monica what her job as a youth worker involves: “As a youth worker I have a really varied role. I organize and run groups, hang out with people one on one, manage the Facebook page. Basically It’s my job to support young people and bring young people living with HD together and that can be anything from visiting a parent with a young person, catching up for a coffee to organizing camps and holidays outings and information sessions.” Monica says she absolutely loves working with young people impacted by HD, and has “met some of the most amazing, strong and loving families and it’s a privilege to be a part of their lives. And young people are just a lot of fun!”

When asked how the youth service has helped young people impacted by HD, Monica said “I think the most important thing the Youth Program has achieved is bringing young people impacted by HD together. Unlike some other illnesses and diseases HD is so rare that most of the wider community doesn’t understand the realities of what living with HD or being at risk is like. And the chances of meeting someone from another HD family is unlikely. Bringing young people together who “get” what that’s like, is the most meaningful part. Even when it’s not talked about, that shared understanding and experience is powerful. Aside from that we base helping people on what they say they need help with. Youth work can be varied and involve anything from talking to a teacher or class about HD and the young person’s experience, to helping them meet their goals, or engage more in extracurricular activities, or just be an ear to listen when things are tough, to other supports and referrals.”

Monica’s most memorable moment working for the youth service was the first camp she was participating in, “there have been so many memorable moments! For me the best so far was the first camp I participated in. There’s nothing more effective to bond a group and get to know people than spending three days doing challenging activities and working as a team. Then the quiet silly moments where we played cards and chatted were some of the best times. Aside from this I have had some amazing conversations and visits with young people and their families.”

HWA’s youth service aims to keep growing and changing with the needs of the community and meet those needs in the best way possible, within the limits of a small team, including consulting with the community and other experts in the field about best practice. Hopefully in the future they will be receiving more funding and be able to offer more services with more staff.

We asked Monica why the need for a youth service in a small HD organisation was such a priority, given that there are only around 7 HD youth workers in the world: “Initially because our community indicated they wanted it. At that point there was no dedicated youth worker, Maggie and Liz who support clients and carers made time in their already busy workloads to make this happen. And it was a success. This led to applying for funding and securing the position. Since the need was seen Huntington’s WA has committed itself to continuing the program, at points even without any funding. HD may not be a young person’s disease In WA, but that doesn’t lessen the impact upon every member of the family. In addition research support early interventions. Supporting young people through their journey, linking people together through mentoring and providing up to date and accessible information the youngest members of our community is so important.“

The youth service has been a great success so far! Regular groups for all age’s brackets hang out and have regular contact via Facebook. Here are some of the things young people who have attended the camps have said about the program:

“I made new friends and talked to people and got to know them which was really good.”

“It was good to know other situations similar to yours and know you weren’t alone.”

“It was great, please make another one! It was good for me to get to know others and bond with them.”

“I got to know a lot of awesome people who understand the situation you’re in and can relate to it.

“I discussed my problems and yeah, and it was great that they were understanding.”

Thanks to Monica for letting us find out about their youth service as part of HWA, and we wish the organisation all the best for their future activities! We have the utmost respect for Huntington’s WA for realising the need for youth services and allocating funds and professional services to tackle this issue. Well done to Huntington’s WA for their commitment to young people!

This document was downloaded from the HDYO website at https://en.hdyo.org/pro/news/433

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